Day 3: Breaking the Cycle

My little girl has quite a checkered past. I don't know what happened to her, seeing as she's a dog and can't talk, but she's damaged. She has lots of weird behavior and a significant amount of fear. We've come to love her for all her quirks, and kind of know what to expect by now. After all, who understands the damaged better than the also-damaged? But some of her mannerisms are just plain odd. She goes into these trances where she checks out, and sits there staring at the wall refusing acknowledge anything until something snaps her out of it-- usually me putting on her leash and making her get off the sofa.  

It hit me just now how much like her I am. My husband wanted to finish discussing something I couldn't shut up about a couple of hours ago while I was at work. But a lot can change in a few hours. By the time I closed up the store, got home, and was heating up my dinner, I wasn't in a space to continue the rather intense conversation we had earlier in the evening. We discussed it anyway, which was frustrating and unsatisfying for both of us. He couldn't get more than a one syllable answer from me, and I couldn't string a sentence together to save my life.

Instead of being remarkably aware of my dysfunctions, be it a fibro fog/flare, stroke brain, hormones, or some other excuse for my mental vacation, I struggled through the exchange until he was pissed off and I was in tears. Then I stormed off to the bedroom in an overwhelmed fit, until I simmered down enough to realize what happened. How I wish I could have recognized it when it was happening! Now I have to go back into the living room and apologize, and have the stupid conversation all over again, which I'm still not sure I'm ready to discuss. So maybe instead of repeating the whole vicious cycle, I'll go in there and tell him I'm sorry. I'll tell him I love him and how much I appreciate his patience with me. Then I'll ask if we can finish our conversation tomorrow because I'm really spaced out tonight, and would rather just enjoy being together before we have to go to bed. That sounds much better. So much better than sitting in my bedroom by myself staring at the wall.

Thanks for joining,

Leah

Day 2: The Sun Will Come Out

Yesterday was hard. One of those days that make me wonder how I've survived so long with this illness. And if all my physical and psychological and emotional turmoil weren't enough, knowing I'd just promised to blog every day for the next thirty days about did me in. Writing yesterday's blog was incredibly hard. I've become accustomed to burying my head in the sand and avoiding reality when I get like that, certainly not talking about it or paying attention to how I feel. How I feel is totally irrelevant when I'm such a hot mess I don't even want to be around myself anymore. Really, who on earth wants to read about a melodramatic sick-chick feeling sorry for herself? But what a total flake, to just bitch out on the first day of my self-imposed challenge! So write that blog I did.  

It was hard, but I've frequently found forcing myself to do something I know is good for me has benefits. Today was no exception. Even though I didn't sleep all that great and had a stiff-neck headache all day, I felt freer in my spirit. I was more clear headed than I'd been in a long while. My problems were still the same, but I wasn't as burdened by their existence. Even being at work wasn't nearly as trying on my sanity. Perhaps writing that blog, when I was in the depths of the really ugly, forced me to turn my sights away from my past and position them on my future? Who knows. All I know is today was indeed a better day than yesterday, and that's all I could have hoped for.

Thanks for joining,

Leah

Day 1: The Consequence of Taking Responsibility

Last week a woman came into my store freaking out because she needed something to even out the tan lines on her shoulders. She's a swimmer, and was wearing a strapless dress to a wedding that weekend. When five different employees explained she could either use makeup or self-tanner, but we couldn't guarantee they wouldn't rub off on her pale-blue dress, this woman descended into a full-on meltdown tantrum and left the store in a fit of rage. While this wasn't the first display of utter ridiculousness I've encountered at my job, it left an impression because I later found out she'd been coming into the store for two months trying to fix her tan-line problem. For two months my co-workers had been telling her to get a spray tan or go sit in the sun. For two months she ignored reality, then went ballistic (in public, mind you) when the cosmetics department couldn't fix her very important problem. For reals, yo?

I'm a firm believer in taking responsibility for myself. It's the only way I've moved forward and out of the mire of quicksand sucking up my life. I've taken full responsibility for my health-- both losing it and finding it again. I've taken responsibility for the two strokes that left my brain scrambled, the toll all my sickness has taken on my husband, my lack of personal relationships because I'm so unstable and can't reciprocate in any consistent manner, the financial impact of not being able to earn a decent income for over a decade, bla bla bla the list goes on. You name it, I've taken responsibility for it, owned it, and am actively trying to overcome. 

But all this responsibility taking, in a world where people blame others for not being able to erase their flippin' tan lines, is wearing me out. It's incredibly hard, psychologically, to rise up over constant and pervasive illness and pretend everything is fine in order to accomplish anything in life. Especially on days like today, when the flare gets so bad I become hysterical over the prospect of losing all my progress and descending into the free fall of never-ending sickness. So just for today I didn't pretend everything was fine. I had what I call a "yesterday" day and allowed myself to wallow in the full-blown misery of my past. I skipped the gym, indulged my fear, and accomplished absolutely nothing. While it totally sucked, I do have to say I am immensely looking forward to tomorrow.  

Thanks for joining,

Leah

30 Day Challenge

I'm desperately searching for some control in my life. While I've mostly recovered from the insomnia-induced regression my health took over the last few months, ultimately the management of my fibromyalgia has slid down a notch. I'm growing increasingly dissatisfied with my part-time job, due in large part to spending more of my days in a viral-flare anger fit. And my book-- my raison d'etre, my heart and soul, the culmination of four years of tireless work I'm done writing, but am taking forever to finish editing, seems to be floating further and further away. The list goes on; my house is a mess, dogs need to be groomed, laundry is out of control...need I drone on? All the aforementioned has me so stressed out, I can't even quiet my rattled brain enough to compose a blog with any substance, which makes me feel even more desperate and searching than I was before.

Being back to work has made me realize how much I've changed in the four years it took to recover from my strokes. I'm not even the same person. It makes sense if I really ponder it, considering I got broken down and put back together again too many times to count. The result is an oversensitive, intolerant, moody health-freak who can't relate to my Beverly Hills clientele to save my life. I can't really relate to the employees, either, but faking it has done wonders for my acting abilities-- if I force myself to look on the bright side.

What I want to be doing is investing in my health, or showing others how I found a way to live a pretty decent life with fibromyalgia. Certainly not battling 2 week headaches or going back on medications I previously discontinued due to my fastidious lifestyle. But since I'm not a rich woman, I must earn an income, and that makes managing my health much harder. So I'm challenging myself to take control where I can. Here. I'm challenging myself to blog every single day for 30 days, something I haven't done since the beginning. I'm challenging myself to deliver the subheading of this blog in it's true, unadulterated, messy form: Chronicles of the Ups and Downs and Sideways Progress of a Female Living with Fibromyalgia. The good, the bad, and the ugly. The success, the chaos, and the darkness. A 30 day snapshot into the intensity of the struggle, the power of the fight, and the blessed possibilities.

Thanks for joining,

Leah     

It Sarted with a Willingness to Change

I'm trying desperately to talk myself into going to the gym. Considering I woke up with a headache and a bit of that "hit by a truck" feeling, the later it gets the less I want to. I mean I want to, of course, who wouldn't rather spend the day wrapped in a strong and powerful endorphin afterglow instead of feeling like roadkill? But really, all my dwindling ambition does is remind me how far I've backslid since August. That's when I got the first cold, followed by another, followed by such intense insomnia that left me so immune zapped, I got the second-worst flu of my life.

Yes, the last two months changed my life a lot. It certainly reminded me how vulnerable I am, and how sometimes despite my best efforts, fibromyalgia is stronger than anything I can do to thwart its never-ending misery. But that's old news. What I find quite a bit more interesting is how willing I am to change to keep my grasp on my health and therefore, my life. I've made all sorts of adjustments to my healthy-food consumption, revamped my workout to accommodate my weaker immune stamina, and last but not least, am going to bed before midnight and waking up at 8 a.m. like a normal person who has some sort of grasp on their life. What a concept. While I can't credit any one change with a vast and sweeping improvement, I am slowly returning to my normal, crazy self. Yeah, I'd say the last two months sure shook up the status quo, and maybe not for the worse.

When I first got sick in 2005 I talked to an Italian doctor who had CFS/ME too, and said the only way she recovered was to change EVERYTHING about her life. She moved to a different city, got a different job, changed husbands, and learned how to live differently in every single way. It seemed like frivolous, irresponsible advice at the time. I mean, did she just get rid of her children too? In my mind, there are some things a person just can't turn their back on. Ten years later I totally get her wisdom, with some modifications. While I've kept the same husband, seeing as I'm blessed enough to have a husband worth keeping, everything else has changed. I didn't realize it at the time because the metamorphosis was so slow, and there was so much backward progress compared to so little forward movement. However, I believe I've maintained my grasp on my health and therefore, my life, precisely because that change was slow enough to own.

Fibromyalgia is an extremely complex illness caused by a variety of reasons that affects different people with different severity. That paradoxical reality is part of what makes treating it, living with it, and being accepted as legitimately sick so incredibly difficult for many patients. I didn't get my grasp on my health back by reading a book on how somebody else got better from fibromyalgia; I read 50. I didn't stabilize from giving up aspartame or gluten; I gave up everything over the course of many years and slowly added back the things I had no adverse reaction to. Gluten stayed and aspartame went. And I certainly didn't improve the quality of my life by taking a miracle supplement; I tried a slew of them and stuck with the ones that made a difference and didn't break my pocketbook. I've found what works for me, which isn't necessarily what will help the next person, but must always remember it started with a big fat dose of desperation and that all-important willingness to change.

Thanks for joining,
Leah

#fibromyalgia #chronicillness #change #struggle #persevere                  

How Are You?

Somehow those three innocuous little words have become one of the most dreaded questions in my existence. One would think "How old are you?" would rub me much wronger, given the youth-obsessed culture we feed off of like vampires here in good ol' America. Strangely enough, given all I've survived in my younger years, I'm actually quite proud to confess to my thirty-nine years of existence. "How much do you weigh?" should hit me as pretty offensive too, but considering I'm down about 100 lbs. from my all-time prednisone/Lyrica high, and pump so much iron I can easily stuff my folds of remaining elephant skin into a svelte size six, I'll gladly tell the world I still weigh in at a walloping 148 lbs. 

But "How are you?" is a different matter entirely, because I'm seldom fine. Yet this little pleasantry is how every single encounter starts, with every single person I cross paths with, every single day of my life, forcing me to either lie or complain, neither of which I'm comfortable doing. In fact I'm not just uncomfortable doing so, I kinda refuse to answer. Not to a customer at work, where I'm being paid to represent the company, not my personal problems, but pretty much everyone else. For to lie is to betray myself and my reality, which after ten years of living sick every day I just can't do anymore, but to complain opens an even bigger can of worms.

Complaining makes me weak. It makes my problems everyone else's problems, which they aren't. Grumbling about how horrible I feel, or bad I slept, or the amount of pain I'm in only makes my reality more horrible, tired, or painful. Living with chronic illness means in order to get through life I have to ignore the internal alarms my body is blaring and instead talk about things I couldn't care less about, like Donald Trump or how badly my hair needs a trim. Therefore, the very last thing I can do is answer somebody's pleasant, mindless inquiry into the status of my state of being. "How are you?" is far too personal of a greeting for polite conversation, in my book. When I see you, tell me you're happy to see me, or that it's a nice day outside, or how pissed off you are at your husband, but please, for the love of all things holy, take pity on this sick girl and don't ask me how I am. 

Thanks for joining,

Leah

#fibromyalgia #chronicillness #fibro #fibroblog